NB: THIS TRANSCRIPT WAS TYPED FROM A TRANSCRIPTION UNIT RECORDING AND
NOT COPIED FROM AN ORIGINAL SCRIPT: BECAUSE OF THE POSSIBILITY OF MIS-
HEARING AND THE DIFFICULTY, IN SOME CASES OF IDENTIFYING INDIVIDUAL
SPEAKERS, THE BBC CANNOT VOUCH FOR ITS ACCURACY.
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PANORAMA
FIGHTING FOR CARE
RECORDED FROM TRANSMISSION: BBC-1 DATE: 18:07:04
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ANDY DAVIES: Thousands of families in the UK have to face the burden of dementia every day so why
do we make the lives of some of the even harder.
PETER BENNETT: I gave Ann an assurance that I would never let her go in a home, she would stay with
me for good. She would always be with me and I would always look after her, and that commitment I'll
fulfil if it kills me.
DAVIES: This woman's husband is dying of Alzheimer's. She had to fight the NHS for nearly 3 years to
get the right care for him.
BARBARA POINTON: This report says Mr Pointon's physical condition.. essentially there is little change
over the past year or even 2 years and that is rubbish.
DAVIES: On Panorama we show how even after a major government review a vital care system for people
with long-term illness is still being undermined by delay, obstruction and injustice.
FRIEDA BRAITHWAITE: The future is not what we hoped for (emotional) but I'm sure with a bit more
help it can be a better future for us than it would be if I'm left to flounder around like I am now. (quickly
brushing away a rolling tear)
DAVIES: This is also a story about us and the value we place on caring for people at the end of their lives.
Whitehaven, Cumbria, on the northwest coast of England, home to one of the three quarters of a million
people in Britain who have dementia.
PETER: (Comforting Ann) You're lovely aren't you. My treasure.. are you my treasure?
DAVIES: Peter Bennett's wife, Ann, is in the very last stages of the degenerative brain disease Alzheimer's.
ANN: (murmurs something unintelligible)
PETER: I do wish I could understand what she tries to tell me, because if she has a problem she can't tell
you. If she feels unwell she can't tell you. If she needs a drink she can't tell you. You know, you've just got
to try and plan it and make sure that she has everything that she needs.
DAVIES: Peter is one of over two million people in Britain who care at home for someone who is sick or
elderly.
PETER: Well I remember some years ago the specialist said to me: "It's no longer Ann, it's not Ann
anymore, it's not the woman you married." I disagree with that. Ann still recognises me and she still smiles
at me when she sees me, and it's worth everything. She's still Ann. She's still my wife. And I love her just
now as much as ever I did. Things haven't changed in that respect, nor are they likely to.
BBC Look North, 1992
ANN: We've got this marvellous site just next to the sea…..
DAVIES: This was Ann 12 years ago, a prominent figure in the local community. She became leader of
the council shortly after Peter had served as Mayor of Copeland. But then came the Alzheimer's, forcing
Ann to retire early. That was 10 years ago. Peter, who is 69, has been caring for her mostly by himself ever
since.
PETER: It is a 24 hour job, day and night. Oh I'm the only one doing that and it's very stressful.
DAVIES: Ann can't control her limbs. She's doubly incontinent, epileptic and often in danger of choking
to death. What Peter wants is for the health service to take over and look after Ann with what's called
"NHS Continuing Care", a programme under which some people with long-term illnesses qualify for free
hospital style care in any setting, even at home. But the NHS has told Peter, she's not ill enough to qualify.
PETER: I want the best care that I can get for my wife, and I don’t care what it costs, whether it's me or the
Health Authority, I don’t care what it costs. But one has to bear in mind that both of us have worked all our
lives and paid all our lives into the Health Service and it's not unreasonable to expect something back in
return.
DAVIES: Three hundred miles away in the Cambridgeshire village of Thriplow another family faces the
challenge of dementia. Barbara Pointon has been caring for her husband, Malcolm, for 13 years. They used
to work together as senior lecturers in music at Cambridge University. Like Ann Bennett in Cumbria,
Malcolm is in the last phase of his Alzheimer's, but unlike Ann, all of his care is paid for by the NHS. He
and Barbara have been granted continuing care, but they've had to fight every inch of the way to get it.
BARBARA: Right Malcolm, here comes the chariots of fire.. (ref. to wheelchair, into which Malcolm is
lowered by hoist)
DAVIES: Anyone who needs intensive health care over an extended period, whether through mental illness
or disability, can apply for continuing care. If awarded, the NHS pays for every care need. In Malcolm's
case, 24 hour cover costing over £1000 a week.
BARBARA POINTON
It's surprising where this money goes. £500 a week for a live-in carer, and £400 a week for four nights of
night nurses because they are paid at a higher rate, and £100 a week for me to have one day off; an hourly
paid person comes in to cover me for 12 hours.
DAVIES: How much difference does continuing care actually make?
BARBARA: It means that Malcolm can have quality of care. It means that I can have a little bit of time off
each week. It means that there's somebody on duty some nights a week which means that we can actually
employment tribunal some sleep and it makes all the difference.
DAVIES: Making continuing care available in a patient's own home is a key component of this scheme.
For Malcolm it means familiar surroundings and a regular care team.
How do you know when Malcolm is happy with…
PAT NEEDHAM
Live-in carer for Malcolm Pointon
He talks with his eyes. You can tell. He talks with his eyes, Malcolm, and I can tell when he's in pain. I
know when he's in pain. I know when he's going to choke, you know.
DAVIES: How can you tell when he's in pain?
PAT: Well his face.. his face, you can tell, and his eyes. His eyes tell you. His eyes tell you when he's
happy or when he's going to be mischievous.
DAVIES: How is he at the moment? How is he feeling at the moment?
PAT: Well he hasn't got his happy face on, that's for sure.
DAVIES: Malcolm can't do anything for himself. He's epileptic, doubly incontinent and has breathing
problems. His life depends on constant supervision. He's one of 20,000 people in Britain who've been
awarded continuing care, but to get it his wife, Barbara, had to battle with the NHS for nearly 3 years.
It all began in 1998 when the Alzheimer's was taking a firm grip.
Barbara & Malcolm – A Love Story
Granada / ITN, 1999
I can't give him 100% attention, it's so wearing. Where do we go from here?
(to Malcolm) That wasn't very nice (as Malcolm appears to throw an unwanted drink).
DAVIES: This chapter in their lives was chronicled in a memorable television documentary.
Barbara & Malcolm – A Love Story
Granada / ITN, 1999
BARBARA: There have been times this last few weeks when I've felt that I hated him for what he was
doing (Malcolm strikes Barbara as she kneels, helping him to dress) not just to me but to the thing that
was so precious between us. I felt that the whole thing was disintegrating
DAVIES: Malcolm was drifting further away and when he became more aggressive, Barbara reluctantly
entrusted his care to a nursing home. There he seemed to decline even more rapidly.
BARBARA: I thought he'd only probably got six months left in my estimation. He was so gaunt. I think
he was wanting to give up. His eyes were so vacant. I was actually prepared to let go of Malcolm at that
point, and then one day the pleading in his eyes just got too much for me and I made the arrangements to
bring him home.
Barbara & Malcolm – A Love Story
Granada / ITN, 1999
(Malcolm, garbling incoherently, cries on Ann's shoulder)
ANN: (to Malcolm) Oh come on, let me give you a big hug.
And I thought I must run with it, whatever it seems that he wants. When he walked into this room he
looked at that picture and said: "Home" and we hadn't had a word for months and months and months.
And it was a very moving moment and I knew I'd done the right thing.
DAVIES: But with Malcolm back home, Barbara desperately needed help. She watched as the dementia
further crippled her husband. To her it was now obvious that his needs were primarily health needs that she
believed made him eligible for NHS continuing care. Four times she went in despair to the local health
authorities to ask them to provide it.
BARBARA: Each time the answer came back: "This is not health care, what you're doing is only social
care, so it's not the responsibility of the NHS, it's the responsibility of Social Services."
DAVIES: Social Services usually only provide social care, help with basic tasks like washing and feeding.
Free in Scotland, means tested elsewhere. Being denied continuing care left Barbara, aged 60, working full-
time to care for Malcolm, and paying on average £5,000 a year for extra help. She was convinced that in
Malcolm's case the NHS had simply got it wrong. So she appealed to the health ombudsman who deals
with complaints the Health Service and she commissioned and independent medical assessment.
BARBARA: We brought in a top dementia consultant and she said that Malcolm's needs were so complex
that of course it was health care, and that kind of stopped the NHS in their tracks. So then we had this
pantomime situation where the nurses were saying: "Oh no he doesn't qualify." And the consultants were
say: "Oh yes he does." (laughs) and here were we, stuck in the middle.
DAVIES: Finally, in December 2002, the local health trust backed down. Malcolm, they conceded, had
been wrongfully denied NHS continuing care. But it took them nearly 3 years to admit it, for Barbara 3
very difficult years.
Do you accept that significant mistakes were made in this case?
SALLY HIND
South Cambridgeshire Primary Care Trust
We do. I think one of the significant problems was the time it took to be able to resolve this satisfactorily
for the family, and we've apologised to the family for this, because that was not acceptable.
DAVIES: Why did it take so long?
SALLY: The reason it took so long was there were many different professional opinions being expressed
about how the needs should best be met, and that very often happens, different clinicians will have different
opinions.
DAVIES: It was up to you to come to a decision pretty quickly. They were in a very vulnerable stage of
their lives.
SALLY: Absolutely and that was one of the lessons we've learnt and one of the set of changes we've put in
place as a result of this case.
DAVIES: A year ago the health ombudsman described parts of the continuing care system as opaque,
unfair and at times unlawful. The government has since instructed each health authority in England and
Wales to review its procedures on continuing care and compensate all of those wrongly denied it. Last
month it emerged that the government had identified nearly 800 other cases where continuing care had been
wrongly denied to patients. They still have another 5000 to investigate.
STEPHEN LADYMAN MP
Health Minister
I'd like to say we're very sorry. It shouldn't have happened. It did. We're moving to put it right.
DAVIES: Do you think the system is fair now?
STEPHEN: I do. It simply is fair. I believe that the information is available for people who need to make
these types of assessment. I think professionals are now properly trained in what is.. how the system works
and should be able to advise people, so I think in the future we shouldn't have the problems we've had in the
past.
DAVIES: But despite the review and all the good intentions, there are signs that the system still isn't
working properly. In Stratford, Warwickshire, one family has just applied for continuing care. Michael
Douthwaite suffers from Lewy-Bodies, a debilitating illness similar to Alzheimer's. His wife, Freda, who is
72, is his main carer. Freda gets help every day from Social Services but it costs her over £400 a month.
FREDA DOUTHWAITE
We've nearly had 50 years together, you know.. it's an awful long time. We've been together a lot longer
than we've been apart. This is the hardest thing I've ever faced.
DAVIES: What do you think is in store for you and your family over the next couple of years?
FREDA: Oh, well.. I really…. (emotional)
DAVIES: It's okay Freda, you don’t have to answer that. No, I'm sorry.
FREDA: (breaking down) I fear for the future really.
DAVIES: Do you want to stop?
FREDA: I mean, sure we've had some happy times but… We'll just have to try and enjoy what we can; we
need more help to help us do that.
DAVIES: During a ten day stay in a residential home last year Michael's condition worsened, now he can
no longer walk unaided. On his return from the home an emergency nursing team told Freda she needed
NHS continuing care, but like many relatives, she'd never heard of it. She had no idea how to apply,
neither, it seemed, did the health professionals.
FREDA: The social worker was asked would she refer us, she said it wasn't her, she said it was the nurses.
The nurses said no it wasn't them. So then I tried the doctor, the GP who is a very nice lady. She said:
"Yes I'll keep trying and if you hear anything, you tell me."
DAVIES: It took 3 months for Freda and Michael's application for continuing care to be finally submitted.
Then when his needs were assessed, the process left something to be desired. Freda was asked to submit
one of his old Social Services assessments, an assessment based on notes compiled 6 months earlier.
FREDA: That was in October that he was assessed and they were included in this application you see. But
I realised.. I gave permission at the time and then it dawned on me that.. and how Michael is now, they were
hopelessly out of date.
DAVIES: In Cumbria Peter Bennett had to wait 5 months before his wife could be assessed while the local
health trust reviewed their continuing care programme. Then, last September, they told him she didn't
qualify. The district nurse and GP were still monitoring Ann regularly but Peter tried once more for
continuing care. In November she was assessed against, this time a specialist consultant advised the local
health trust that Ann now needed intensive nursing. Yet on Christmas Eve they wrote to Peter to tell him
once again that she wasn't eligible for continuing care. The process had taken nearly 9 months.
PETER BENNETT
It made me very bitter. It made me determined. It put me under a lot of physical pressure, a lot of
emotional pressure. And every time I go in, and every time she tries to talk to me, it hurts. She gets a little
bit of congestion and has difficulty getting it up, it's a bit tight, and the nebuliser loosens it and then she's
able to expectorate. If she's got a bad infection then it's regular need, every 4 hours, and then you usually
have to mechanically remove it with a suction pump.
DAVIES: Peter's been offered some extra help by the health trust but he's clear that what Ann needs is fully
funded continuing care. In the meantime he believes he's effectively been forced to assume the role of a
full-time registered nurse.
PETER: What I have done with suction, carers couldn't do it, or can't do it, wouldn't be allowed to do it.
Health care assistants can't do it. Registered nurses can, and that can be the difference between life and
death and this is why it's so important. If it hadn't been for the suction machine Ann wouldn't be here now.
Hello Father. Welcome again.
PRIEST: Hello Peter. How is everything today?
PETER: Not so bad. Not so bad. Are you coming in?
PRIEST: Yes.
(giving communion) In the name of the Father and of the Son and of the Holy Spirit amen. The Lord be
with you.
PETER: And also with you.
DAVIES: Every week Father Luke brings Peter and Ann holy communion.
PRIEST: Let this holy water call to mind your baptism by which…..
DAVIES: Peter decided not to give up on continuing care. He's launched an appeal. He's expecting a
result in two months time.
PRIEST: The body of Christ. Amen. Pieter, the body of Christ.
PETER: Amen.
PRIEST: Keep up the good work you're doing Peter and I'll see you next week.
PETER: That's fine father, thank you.
DAVIES: As Peter begins his appeal, in Stratford Freda Douthwaite has been waiting anxiously for the
result of their first application.
FREDA: There's been such a dramatic change in his condition Christmas really, I mean I feel we needed it
at Christmas and we need it a lot more now.
DAVIES: Last year the health ombudsman told the government it was crucial that relatives were kept fully
informed at every stage of this process. But it's nearly 4 weeks since the health trust made a decision about
Michael, and Freda has still heard nothing.
Day by day Freda watches as the dementia slowly robs her of the man who has been at the centre of her life
for nearly 50 years.
HELPER: 1, 2, 3 – let go now, put your feet down on the ground. Michael, do you want to go back down
again a minute, try it again. Are you alright?
MICHAEL: Yes.
HELPER: Okay, you try and let go of the chair when you stand up. Yeah? Okay, after three – 1, 2, 3. Let
go the chair Michael.
FREDA: That's it. Well done.
HELPER: There's a step here Michael.
DAVIES: Then 26 days after they came to a decision, the health trust finally give Freda the result. Michael
has been turned down.
On what grounds have they turned down your application for continuing care?
FREDA: I don’t know. I just don’t know that.
DAVIES: No one has explained that?
FREDA: No, no one. No, I don’t know yet. I would like to know.
DAVIES: So it took you 3 months to find out how to apply for continuing care. When you finally found
out, someone came round for half an hour and did an assessment. A meeting was held, a decision was
given, and you only found out 3 weeks later, and they didn't tell you on what grounds you've been refused.
FREDA: Yes, not yet. I mean that's something that we're hoping to find out because we'll have to discuss
that again with them. In the meantime, we're dealing with a decelerating situation.
MICHAEL: (taking drink from Freda through straw) I'm not used to… to… I… um….
FREDA: Hey?
MICHAEL: (garbles something unintelligible)
FREDA: (to Malcolm) We haven't had a lot of drinks today, you've got to drink. Come on, suck it up.
You're gradually narrowing your horizons and that's hard for me to take. I'm just lucky to still have him and
I just need to keep him at home. (emotional)
DAVIES: That's why the fight is worth it.
FREDA: Well I think it should be. I hope so. It's just I don’t think.. when me and my family are working
so hard to stimulate him and do nice things with him and keep him going, even though sometimes he's too
tired to do them, we keep him going and when we're working so hard for ourselves, I just think we deserve..
you know.. some help. I think we deserve the National Health Service on our side, I really do. And I
mean.. it's going to be too late soon.
DAVIES: Whitehaven, late February and Peter's appeal has been delayed. A few days later his health takes
a turn for the worse.
How are you?
PETER: Oh not too bad.
DAVIES: How are you doing?
PETER: Not so bad.
DAVIES: Good to see you.
PETER: Nice to see you.
DAVIES: Tell me what's happened. You had a stroke?
PETER: Well I wakened up on the Sunday morning and my arm, I thought I'd been lying on it and when I
tried to get out of bed my leg was the same. And the doctor came and said I'd had another event, and
recommended I go in hospital. I didn't.
DAVIES: Why aren't you in hospital?
PETER: Well what would happen to Ann? I'm the only one in the house now and Ann is in the next room,
and there's no way I would go I hospital until I was absolutely certain that everything was in place to look
after Ann.
DAVIES: After his stroke the health trust brought in an emergency care package for Peter and Ann. For
the next three months they've been provided with the equivalent of NHS continuing care, with 24 hour
intensive nursing cover. But already there's a problem tonight as on the previous night, he's been told
there's a temporary staff shortage. So Peter, who is 69 and still recovering from a minor stroke, is back on
duty all through the night.
PETER: Sometimes I feel absolutely, and I mean absolutely damned exhausted, tired. I didn't count on
having to stay for three nights out of the last four because that's the type of service that's on offer. And
when you question them, the service, they can't do any better, they can't get staff. So, so much for 24 hour
care. But I made a commitment to Ann some years ago when Ann realised what her problem was, and I
gave Ann an assurance that she would stay with me, that I would never let her go in a home, she would stay
with me for good. She would always be with me and I would always look after her, and that commitment I
will fulfil if it kills me. I'd like a miracle, and everybody looks for one. You know in your own mind it's
not going to happen, and you know we all can't live forever, none of us can live forever. But we like to
hang on for as long as possible and particularly like to hang on to your dear ones as long as possible, to
keep with you, and that's all I ask, to have her as long as possible.. to keep her with me as long as possible.
Might be a little bit selfish, just can't help that.
DAVIES: Peter's been told he'll have to wait another month before the outcome of his appeal. In the
meantime, the Health Trust will do yet another assessment of Ann. Back in Stratford, Freda, like Peter, has
decided to challenge her health trust and launch an appeal.
FREDA: (Reads from letter) I was surprised and disappointed that our application for continuing care
failed. I wish to appeal against this decision as I think my husband's condition meets the criteria on several
counts.
DAVIES: She and her daughter Karen have finally tracked down the local NHS document which sets out
the criteria by which a patient is assessed for continuing care. But, as with many relatives, they're finding it
all rather difficult to decipher.
KAREN: (reading letter) "An individual will be eligible for continuing NHS care under criterion 1, when
the complexity or intensity of……"
DAVIES: These criteria are based on guidance issued by the government, guidance which last year the
health ombudsman said was too difficult to understand and should be made simpler.
KAREN: "…. to the extent that goes beyond what can properly be described as incidental or ancillary."
What does that mean?
FREDA: I was going to ask you that.
DAVIES: Last February the health ombudsman asked you to make the national guidance criteria much
clearer. Why haven't you done that?
STEPHEN LADYMAN MP
Health Minister
Because they're clear enough and they meet the legal framework, and none of the strategic health authorities
that have had to assess the ah.. their own criteria against the department of health criteria have expressed to
us the view that it's too complicated.
DAVIES: That's not the view of the health ombudsman who's acting on behalf relatives who are trying to
access the system.
STEPHEN: It is easy to understand. Have a look at the central guidance, there is nothing in it which is not
understandable.
DAVIES: In Cambridgeshire Barbara Pointon, the woman who fought for nearly 3 years to get continuing
care has just discovered that after all that, she could have it taken away. She and her lawyer have been told
that, as with all NHS continuing care patients, Malcolm will have to be reassessed.
LAWYER: It's ironic, isn't it, that after all these months later that we're finding ourselves....
DAVIES: But now there's a new set of criteria against which Malcolm's condition will be judged?
BARBARA: (to lawyer) Hopefully he doesn't do any of these things anymore: "severe and persistent
violent behaviour, grossly uninhibited antisocial behaviour, defecation and urination in inappropriate areas"
I mean.. poor man, he can't even walk.
I thought I'd done all the hard work, I thought I'd given all the evidence I needed, and here we are having to
prove it all over again, and quite honestly I don’t think I would have taken it to the ombudsman to ask for
continuing care if I had known that there was all this heartache and distress being caused at the end of it. I
think I'd have said oh I'll just give up, and maybe that's what the NHS want us to do, that if enough
obstacles are put in our way, if enough difficulties are thrown up, then I'll shut up and go away.
DAVIES: Is it fair to make these people go through assessments all over again? I mean don’t they deserve
a bit of a break.
STEPHEN LADYMAN Member of Parliament
Health Minister
People get better, that's the main reason why NHS continuing care has to be reassessed.
DAVIES: With dementia, with Alzheimer's ?
STEPHEN: NHS continuing care is available to people with all sorts of conditions, and they get better.
DAVIES: But people with dementia and illnesses like Alzheimer's they're not going to get better and the
question is…
STEPHEN: That's not true. That's not true. They're not going to be cured, certainly, but there are many
people with dementia and Alzheimer's who do go through a period of recovery and I've actually heard
stories and I've seen examples of people who had very severe needs whose care setting changed, whose care
regime changed and who did recover.
DAVIES: Early May, Peter's appeal has been postponed yet again. He's been up all night with Ann.
PETER: (on the telephone) Oh good morning, it's Peter Bennett here. The doctor is programmed for a
visit this morning and I was wondering if it was possible for the doctor to visit sooner rather than later.
We'd a bad night with Ann last night and spent quite a lot of time aspirating fluid off her.. from her trachea.
Thanks a lot then. Bye.
So hopefully the doctor will be here not too long. I'm a little bit tired of it now though. I'm getting a bit
worn out. But I've been here so many times before, but I thought this morning it was over. I've never seen
her quite as bad as that.
DAVIES: But it's better news in Stratford on Freda and Michael Douthwaite's appeal. The Health Trust,
on reflection, have decided to help out a little more.
KAREN: Hello.
FREDA: Karen, I've just had a phone call from the social worker and do you know, they're definitely.. she
said that there'd been a meeting, had gone ahead and they've agreed to fund part.. Social Services, in part,
continuing care. So I'm really….
DAVIES: Freda will get an extra care assistant and a day off a week. It's welcome, but it's not full
continuing care, and it's actually going to cost her another £160 a month for this extra support, support it's
taken her six months and an appeal to secure.
KAREN: Long time coming though, isn't it.
FREDA: I really need the help, you know.
At least I've got some funding in to help me immediately next Monday. If I had disputed that decision and
said no I'm not accepting that, then I wouldn't have had the immediate care. I want immediate help now,
because it's too much for me, and then it will be reviewed quite soon, and then it can be decided if we need
further help then we would again.. you know.. perhaps apply for full funding.
DAVIES: South Warwickshire Primary Care Trust didn't want to be interviewed, but in a statement they
said: "We did not handle communication with this case as well as we would have liked and apologise to
the family." They said they'd: "improved Michael's care package not because they'd made a mistake the
first time round, but because since then his needs had changed. Cases can alter and in some cases this is
rapid."
In Whitehaven Peter has been told that after appealing five months ago, today he'll hear from the Health
Trust, an answer at last as to whether Ann qualifies for NHS continuing care.
PETER: (answers telephone) Hello. Andres, nice to hear from you. Not so bad. Yes, alright Andrew.
Thank you very much for ringing. Bye.
DAVIES: Well?
PETER: It's been confirmed that Ann has been granted continuing care.
DAVIES: It's a complete reversal by the Health Trust. Not only that, but now they even admit to Peter that
Ann probably should have had continuing care as long ago as January 2003.
PETER: This now ensures that whatever happens, Ann will be able stay at home.
DAVIES: The two of you will be together.
PETER: Together, and that's important.
DAVIES: That's what you wanted.
PETER: That's what I've always wanted and that's what I've got.
DAVIES: Peter and Ann Bennett should never have had to go through all of this, should they.
NIGEL WOODCOCK
North Cumbria Primary Care Trusts
The process that Mr and Mrs Bennett have gone through by definition has been very challenging and
complex.
DAVIES: They didn't deserve that, did they.
NIGEL: Ideally the process could have been quicker, we'd all acknowledge that, and I think it's reflecting
that this was a case that fell between two stalls, between an old arrangement, a new one which was still
evolving and there was a learning curve for everyone to work through in taking that forward.
DAVIES: Why are people still being made to fight so hard for this care?
STEPHEN LADYMAN Member of Parliament
Health Minister
It's an expensive package of care. It includes not only your health care, it also includes your social care and
your board and lodging. Now in England…
DAVIES: It is about money?
STEPHEN: It is about money.
DAVIES: A lot of money. Providing continuing care for Malcolm Pointon alone costs the NHS over
£50,000 a year, and with a growing elderly population and more demand for this type of care, we face a
stark choice. Are we really prepared to pay to make this system work properly, or in the future will families
of people like Malcolm increasingly have to contribute towards the cost of this care.
DAVIES: Is it really fair to push the local health services so far when they've only got limited resources?
BARBARA POINTON
If I'm truthful it's not fair, but there's a principle at stake here which is there's a government policy which
says that people with certain health conditions can have free care. If there's a policy, there's got to be the
funding to make that policy work. But it is ridiculous to expect local health authorities to find the money
out of their existing resources.
STEPHEN LADYMAN MP
Health Minister
More people are living to old age, more people with serious conditions like dementia are living longer.
That means that the bill for caring for older people is going to increase. We, as a society, have to face up to
the question, what are we going to pay for ourselves as individuals and what are we going to expect the
state to pay for.
DAVIES: It's now June. Barbara has been away on respite holiday for a week. She's come home to find a
letter from the Health Trust. She's expecting the results of Malcolm's reassessment but the communication
isn't entirely clear.
BARBARA: They've not made a decision and communicated it to me. They've told.. they've just explained
a little bit more about how they make their decisions.
DAVIES: Has the review happened or not?
BARBARA: I don’t know, they talk about the "planned review of 10th June 2004" well it's now the 16th
June. I haven't heard anything.
DAVIES: Attached to the letter is the latest medical assessment of Malcolm used to judge whether he's still
eligible for continuing care.
BARBARA: I'm outraged because this report says Mr Pointon's physical condition essentially there is little
change over the past year or even two years and that is rubbish.
(Barbara breaks down, sobbing into Pat's lap)
PAT NEEDHAM: (comforting Barbara) Oh now come on Barbara, don’t start, now come on… you've got
this far. You'll win in the end. I keep telling you, you're going to win. Now stop it.
DAVIES: A few minutes later Barbara is on the phone to her lawyer who may have heard directly from the
Health Trust.
BARBARA: You rang them, you can tell me the answer. He's still eligible! That's brilliant.
Malcolm, Malcolm it's me, just heard, we've got the continuing care result and we've won! You can stay
home.
DAVIES: Why have you fought so hard for this moment?
BARBARA: I've fought so hard because I think Malcolm deserves it, he deserves the best, and the best is
to be cared for by people he knows and loves and who love him, and that's more important than all the
forms you can fill in, all the letters of argument you can write. It's what's important for the human being,
what's the most humane way of dealing with the situation.
DAVIES: Thousands of families in this country have to watch their relatives die slowly in front of them. Is
it right that some of them should have to fight so long and so hard for their loved ones to have the
comfortable and dignified end we would all want for ourselves?
For more information and to comment on tonight's programme you can visit our website
www.bbc.co.uk/panorama
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BBC Action Line on 0800 888809
CREDITS
Reporter
ANDY DAVIES
Camera
Ranjan Kamath
BRIAN McDAIRMANT
VT Editor
GARETH WILLIAMS
Colourist
ANDREW PARKINSON
Dubbing Mixer
ANDREW SEARS
Production Co-ordinators
JUSTINE HATCHER
KAREN HOOPER
Web Producer
ADAM FLINTER
Film Research
KATE REDMAN
Research
KATHLYN POSNER
Graphic Design
ALEX NEWBERY
Post Production Co-ordinator
LIBBY HAND
Production Manager
GINNY WILLIAMS
Production Executive
EMANUELE PASQUALE
Film Editor
MATTHEW STERLINI
Assistant Producers and Camera
ALISON PRIESTLY
JACK ENRIGHT
LUCY WILLMORE
JANETTE BALLARD
Producer
JONATHAN BRUNER
Deputy Editor
ANDREW BELL
Editor
Mike Robinson
2
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Transcribed by 1-Stop Express, 3 Southwick Mews, London W2 1JG, Email: panorama@bbc.co.uk